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Diagnosed on August 24th, and Confused


Mon, August 30, 2021 9:59 AM

Hello,

I was disgnosed on August 24th, only a week in and I'm very confused. 

In 2015 I found out I had a pretty big gallstone and I had my gallbladder removed. I started bile dumping about a year later. My old doctor didn't do anything about it since he didn't know what was happening. I switched doctors in 2018 and she has been amazing. She figured out in 2019 about the bile dumping and been on Ranitidine ever since. 

I've been getting a pain in my right side, just under my rib cage for years, and she sent me for CT to see if it was kidney stones, it wasn't, but they found I had 10 cm of inflammation at the end of my small intestine. Thats when she send me for a colonoscopy. They confirmed it was Crohn's. 

My Gastroenterologist said it was mild, and prescribed me predinisone. I'm supposed to be on it for 2 months, but I'm freaking out cause of the horror stories I've heard about it, and I don't like taking meds I've never taken before. 

The thing I'm confused about is, everyone talks about flare ups, but I don't notice any changes at all. The biggest change I felt was when I got off dairy but the only thing that changed was I wasn't bile dumping as much and was getting the "I need toliet now" poops. I still feel the same as I did 4 years ago. Is it possible that some people with crohn's don't get flare ups or have I been in a flare up for years? 

Also I have 3 spots in my abdomen that I get sharp pains, is that part of it, and the burning sensation I get in my stomach sometimes?

Just need some guidance as its taking forver for my doctor to get back to me.

Thank!

FPO KnightsofSummer
Joined Aug 30, 2021

Thu, June 16, 2022 2:05 PM

Reply posted for KnightsofSummer.

Can we sources back?

about us 

FPO sonnyquain4445
Joined Jun 16, 2022

Fri, April 29, 2022 12:49 AM

Reply posted for KnightsofSummer.

I also was recently diagnosed.  I think I understand how you feel. I just wonder--for those who have dealt with this for a while--will I ever feel normal again?  I don't know what is even considered "normal" anylmore for UC.  Can anyone help?

FPO Marcel
Joined Apr 28, 2022

Sun, April 03, 2022 5:18 PM

Reply posted for KnightsofSummer.

Hello knightsofsummer. My name is Heather I was diagnosed with Crohn's disease in 2015 a couple years after my husband and I moved to Elkins, WV. I know I was worried then also.
Fast forward to now , I have been seeing a gastroenterologist in Charlottesville, VA since 2018 who I told about the iv infusion medicine Entyvio because I seen the commercials for it. This iv medicine is only for patients with Crohn's disease and ulcerative colitis. She put me on it and  it has been working really well for me. Exercise does help to soothe Crohn's symptoms when paired with the entyvio. I hope this helps.
sincerely;
Heather

FPO midnight0675
Joined Apr 3, 2022

Fri, December 17, 2021 6:23 PM

Reply posted for apd2work.

I ended up not taking the predesone, too many side effects, and horror stories. I talked to my gastro a month ago and he put me on Budesonide, and the only side effect that I've noticed so far is slight heart palpitations at night.

Everythings going good so far. I'm supposed to be on it for 3 months to get my inflammation down, since I only have mild Crohn's, and he said we will go from there. He also wants me on a immunsuppresent, but I have no coverage right now, and it so expensive. 

Been trying to find alternative ways to stay in remission other than meds, so going to talk to him about options after the 3 months. 

FPO KnightsofSummer
Joined Aug 30, 2021

Fri, December 17, 2021 6:19 PM

Reply posted for richardhelsley8.

Hey so I was taking Ranitidine for years till I started getting really weird side effects. I was getting nauseous when taking it, lack of appetite, I dropped 10 lbs in a month cause I couldn't eat without feeling sick. Tried staying off it but my GERD gets so bad that I get swore throats for days. 

I also found out that Ranitidine can cause b12 defiencency, which can cause cold extremities, and a whole slew of other problems, so I'm pretty sure that the Ranitidine made my Raynaud's worse, which I was diagnosed with a few years ago. 

Recently my doctor switched me to Famotidine 40 mg, and its night and day. My gastro also put me on Entocort (budesonide) and eveything's slowly getting better. 

Famotidine is once a day too, so its more convient, supposed to last 24 hrs, less side effects listed too. 

FPO KnightsofSummer
Joined Aug 30, 2021

Tue, October 19, 2021 2:18 PM

Reply posted for KnightsofSummer.

Prednisone worked like magic for me, you won't mind the minor side effects if it is doing its job.  Right now I am having a slight flare up of my Crohn's and my doctor prescribed prednisone for 10 days.  When finished, I am to start Budesonide for 4 weeks.  My doctor mentioned Budesonide is not a powerful or has as many side effects as the Prednisone.  If you are scared about the side effects of prednisone, tell your doctor, he should be able to put your mind a ease.  Also, ask about the budesonide.  I am also on Mesalamine for the long term.  Started out taking 4 of those pills a day, but now only taking one.

Your colonoscopy should tell your doctor a whole lot about your Crohn's.  I technically have "Crohn's colitis".  

FPO apd2work
Joined Mar 12, 2019

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